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Thread: IMURAN - So far so good

  1. #11
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    Helen -
    Thank you SO much for the info....great advice and my doc said same thing the other day(after the post). Its just as important to me to hear from other patients as it is my docs. I mean, you guys are the ones taking the stuff, right? LOL. I am up to 50mg 3x per day - its been about 3 days now, and no stomach issues. I will say though, that I have a VERY strong stomach (the only thing that works in THIS bod), so I dont react to meds that badly and - THank You God - have not as yet had any problms with this. It sounds like you are feeling pretty well and Im hoping that only gets even better! Again, thank you for your input. I am really grateful
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

  2. #12
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    Hi, Helen! I take Imuran as well (not for Lupus, but for RA). I was up to 3 pills and about to increase to 4 when my labs came back and my WBC was zapped. I had to go back down to 1 pill and my WBC went back to normal. Of course one pill doesn't help control much and recently I was increased to 2. I'm hoping my bloodwork stays ok or at least semi-ok so I can continue with the med.
    I read where you said the drug burned your mouth? And hands?? That is so strange! I've never experienced either myself. Have you had any episodes since then?
    I'm glad to hear you're tolerating imuran well and I hope it not only continues, but also provides you plenty of relief! *hugs*

  3. #13
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    I am unfamiliar with Imuran, is it a chemotherapy drug also like Methotrexate? I ask just because my dr. told me that if I couldn't get off the prednisone that the next step would be chomo, I believe that he was talking about methotrexate. He already tried the cell cept but I had some bad reactions to that stuff.
    '
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

  4. #14
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    It is low-dose chemo, yes. If you do use methotrexate, make sure you ask for injections instead of the pills. The needles are small, the shot is quick and simple and you get to skip the stomach discomfort that most folks on the pill do not like so much. Taking it as a shot skips your innards.

  5. #15
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    Hi Scub - Melly is right - yes a low-dose chemo, as is methotrexate. All of these - CellCept, cytoxan, Imuran, MTX - are immunosuppesnant drugs. Because lupus (any autoimmune disease) is almost like an overactive immune system (attacking HEALTHY cells vs. attacking antigens like viruses, colds, etc), these drugs SLOW down the immune system. The problem is they leave our immune systems sometimes unable to fight off REGULAR infections, colds, etc and leave us VERY susceptible to germs, etc. Its VERY important if on any of these meds to take precautions to not be around ppl with any type of infection as we are very vulnerable. Even the most simple cold can REALLY cause a problem, as we have no immune system (or a compromised one) to fight it. At any sign of infection (temperature, chills, fever ) we are to call a doctor IMMEDIATELY.
    I know - all these meds have so many side effects/other implications....It is so important that researchers come up with some new meds for us SOON!! There has not been a new med approved for lupus in 52 years....pretty sad.
    Hope you are all feeling welll!
    Lauri
    PS - Melly - Yes, I did get the mouth issue the first and second time, but NO PROBLEMS since. It was listed on the Precautios paper thats stapled to the prescription to wash your hands after using. THat p[aper was as long as a roll of toilet paper!!! LOL - Oh well, choices are limited for us at this point...Im always praying for new, less dangerous meds....Take care! And thanks for the post
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

  6. #16
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    Thanks Lauri and Cathy for the info. I guess one of the downers is that I am an instructor at Northwest Lineman College, there is always somebody with a cough or a sniffle, cold or flu. grrrrrrr Oh well, we can only do what we can do right?
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

  7. #17
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    Hi Lauri,
    Thanks for posting the information about the Imuran. I have been on 50 mg of Imuran for over a year now (along with different dosages of prednisone). I was finally weaned off of prednisone in December 2009. However, as you may remember, I have recently started another flare. So I was put on a prednisone starter pack (30 mg prednisone for 4 days, 20 mg of prednisone for two weeks). After having a follow up with my rheumy on Monday, my dosage was changed to 10 mg prednisone and he wants me to work up to 100 mg Imuran. Currently, I am on 75 mg Imuran. I don't seem to experience any side effects from the Imuran but I do from the prednisone. So I am glad my rheumy is weaning me off of prednisone fairly quickly. I am being cautious about upping my Imuran dosage too quckly. So how quick did you get up to 150 mg? Also, would you recommend that I take one 50mg pill in morning and one in evening? My rheumy said it was up to me if I take it all at once in morning or once in morning and once in evening. I never did well with Plaquenil so this drug has done wonders for my inflammation, pain, headaches, fatigue and platelet levels. Well, at least until the start of this recent flare
    Jina

  8. #18
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    Oh gosh Jina
    I missed this post - so sorry! I started on 150mg and have no problems. I started with 2 - 50mg in morning and 1 - 50mg at night. I was just upped, however to 200mg total (2 in AM, 2 in PM) still not too many side effects (some bloating, gas, uncomfy belly) but I absolutely take it with food. I am dwon to 25mg now on the prednisone. My doc is doing it VERY slowly as it can affect your adrenal gland if you taper down too fast (if youve been on it ofr a while). I am SO ANXIOUS to get off the damn prednisone!! However, I have not gained any weight from it this time, Im actually LOSING weight and doc says thats the Imuran.
    Still no hairl loss or vomiting for me (thank you God) but - as I was recently started on Mestinon as well (for Myasthenia Gravis) which can cause - lets say - some bathroom issues, I have to REALLY make sure I eat, Im taking Pepto Bismol here and there, and Phazyme for gas. I get some pretty bad stomach cramps for a bout a half hour or so during the day, then it passes. Totally worth a half hour of discomfort to get me out of this flare.....Im officially on MONTH THREE with this flare...cant do much of anything....somedays, just brushing teeth and washing face put me in bed for hours....this flare is brutal. I miss the days of a couple swollen jioints and a couple rashes here and there!!
    Anyway, hope this helps. Any question, feel free to ask or PM me honey...again sorry I missed this post <3
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

  9. #19
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    Just to say im thinking of you and glad the Imuran is helping but hope you better soon.

    love
    Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  10. #20
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    Hi Lauri,
    I am so sorry that this flare has been so tough for you. Hopefully, the change in Imuran dosage will kick in soon! I am now up to 100 mg Imuran and down to 5 mg prednisone. Like you, I am not gaining weight this time around on the prednisone or experiencing the round face and so far I am not experiencing any stomach issues from increasing my dosage of Imuran. However, I just had a CBC and Chem panel and my platelets look really good but I am concerned that I may be experiencing some kidney issues with the higher dose of Imuran (or maybe because of this new flare??). My labs from two weeks ago show my potassium levels are 3.4 and my Creatinine level is high and Creatinine clearance is low. I am considering calling my rheumy on Monday to find out what my chemistry labs for this morning say. When I did a chemistry lab in January everything was normal so this sudden change has me concerned. Have you noticed any change in your potassium or Creatinine levels since increasing your Imuran?
    Jina

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